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It is important to assess each case and personalize the care for the individual
patient, and there is anecdotal evidence of children as old as 13years undergoing a
successful CPRE with minimal morbidity and excellent clinical outcomes including
a 2-h dry interval.
Disadvantages of postponing surgery beyond a year of life:
• Psychological impact—emotionally most children can be expected to tolerate
undergoing surgical procedures without massive disruption of normal psycho-
logical development until the age of approximately 8months, or the emergence
of “stranger anxiety.”
• Irreversible changes to the bladder plate with inammatory polyp development
and loss of compliance. These bladder plates do not grow and can cause upper
tract injury if closure is attempted.
• Higher probability that the child will end up with a urinary diversion rather than
reconstruction of the BE.
Parental Expectations After Repair ofBE
The expectations of the parents can be divided into short-term and long-term
outcomes.
In the short term, the parents expect that their child’s surgery will be successful
with minimal complications, i.e., wound infections, failure of the repair, and dehiscence or stula, and provide a normal cosmetic appearance of their child’s abdomen
and genitalia.
Long-term expectations are more functional and include that their child will be
able to achieve urinary continence, void per urethra, have minimal UTIs, and have
no kidney injury. Later in life, parents expect their child will have typical sexual
function and fertility. Most parents are also focused on the psychosocial impact of
being born with BE on their child’s body image, as shown in Fig.5.1.
5 Surgical Considerations: Indications and Timing for Surgery (Dening Outcomes…
75
Fig. 5.1 Parental expectations by age of patient with BE and clinical objectives
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P. P. R ed dy
Clinical Outcomes After Repair ofBE
There is a signicant worldwide lack of uniform clinical outcomes for this patient
cohort, partly due to the dearth of multicenter studies with an adequate number of
patient to achieve statistical signicance and precisely dened patient-reported outcomes using validated instruments [42].
Dening clinical outcomes of surgery for children born with BE is critically
important, as it is only when we have universally accepted denitions guided by
the inputs from patients (patient-reported outcomes) with BE that we will truly be
able to track how well our management strategies are working. It is also imperative
that these outcomes be tracked at multiple intervals throughout the patient’s lifetime, as change is the only constant that we can expect when monitoring a chronic
health condition, such as BE, where there are age-dependent clinical outcomes.
The pediatric and adult outcomes of patients with BE are of critical importance
when counseling an expectant couple with a prenatal diagnosis, as these data may
impact the family’s decision whether or not to proceed with the pregnancy.
In the following section, a few of the currently identied and tracked clinical
outcomes that might be impacted by the timing of surgery will be presented. In the
future standardization of healthcare practices, the proactive collection and analysis
of data obtained from quality-of-life reports and screening questionnaires related to
mental health, urinary continence, sexual function, and fertility should be included.
This will enable us to signicantly enhance the overall quality of care while reducing the cost and burden of care provided to individuals with BE.
Successful Initial Repair ofBE
This is an important outcome and can be dened as the absence of wound dehiscence, bladder prolapse, or urinary stula following the surgical procedure to close
the defect. Successful repair has better long-term bladder, kidney, and continence
outcomes; a positive impact on the psychological well-being of the patient and their
parents; and has been documented to be less of a nancial burden.
Morrill etal. have demonstrated a higher incidence in the rate of dehiscence of
the initial repair of BE in those patients who underwent early/neonatal repair compared to the elective/delayed cohort [37].
The impact of a failed initial repair is signicant. Gearhart etal. have demonstrated
that the mean age at reoperation of children who had failed their initial closure was
1.14years; this is the additional time that the parents have to manage their child’s
abnormal anatomy, and this has been shown to add to the stress of the parents [21].
Numerous studies have demonstrated that patients that require reoperative repair
of BE have smaller bladder capacities, signicantly lower rates of urethral continence, and a higher rate of requiring bladder augmentation or urinary diversion [40].
Joshi etal. have demonstrated in their cohort that patients who required reoperative
repair had a higher incidence of CKD and kidney injury, and while this did not reach
statistical signicance, it points to the importance of a successful initial repair [24].
5 Surgical Considerations: Indications and Timing for Surgery (Dening Outcomes…
The hospital charges related to the reoperative care have to be factored into the
impact of the failed initial repair, and this can be substantial and add to the burden
of care that the parents have to face [21].
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Psychological Impact onthePatient withBE
The correction of genital abnormalities before the age of 3years in both genders has
been shown to have a positive impact on the child’s psychological development and
body image, as the repair is completed before peer relationships and sexual comparisons have not yet evolved [45]. There is a higher rate of successful bladder and
abdominal wall closure in the elective/delayed repair cohort, and this will positively
impact the child.
Psychological Impact ontheParents ofaChild withBE
In the neonatal period, parents who were not expecting a child with this diagnosis might require crisis intervention. All parents of a baby born with BE deserve
to be provided with psychological support to work through their emotions, as
this will facilitate attachment to the child and prevent later serious psychiatric
problems [47].
The correction of genital abnormalities before the age of 3years in both genders
has been shown to be benecial for the parents, in which it limits the period of time
during which they have a child who appears “abnormal.” Although the surgery may
not eliminate all of their concerns, it afrms the conditions correctability and provides them with hope for their child’s future [11, 45].
Bladder Growth
It is believed that early bladder closure results in better bladder cycling and improved
bladder growth. Baradaran etal. have studied the impact of the timing of repair of
BE on eventual bladder growth [3]. In their cohort, the indications for the elective/
delayed repair were either a small-bladder template or delayed referral to a center of
excellence for BE repair. They demonstrated that patients undergoing elective/
delayed repair due to a small-bladder plate had an overall smaller bladder capacity,
36mL smaller than their cohort of neonatal repair. However, they also demonstrated
that the rate of annual bladder growth was not statistically different between the two
groups. It is important to note here that regardless of the timing of the initial repair
of BE, it is the timing of the bladder neck repair that ultimately inuences the bladder’s ability to cycle and grow. Most surgeons that have adopted the elective/delayed
repair usually perform the CPRE technique, which permits the cycling of the bladder much sooner than those patients undergoing either the MSRE or the RSTM
techniques.
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P. P. R ed dy
Urinary Continence
Urinary continence does not appear to be directly impacted by the timing of surgery
in current clinical series. The impact of the continence status is related to the outcome of the initial repair, with children that require reoperation demonstrating
lower rates of urinary continence with their native urinary tract and a higher incidence of bladder augmentation or urinary diversion in this group.
Urinary continence is the most common adult concern of patients who had
undergone childhood repair of BE; in one series, it affected 39% of the study cohort
[4]. Urinary continence has been dened as voluntary control of the bladder with the
ability to safely store urine (without harm to the upper tracts) and empty the bladder
when needed. Dr. Dana Weiss will discuss in a later chapter the more appropriate
outcome for patients with BE, which might be the length of the dry interval, i.e.,
duration of urinary storage in the bladder without leakage at rest or with activity.
Urinary continence is signicantly inuenced by cultural norms, which dictate
the acceptable age at which it should be acquired and the duration of the dry interval. In most communities, social continence is dened as being able to hold urine
and stay dry for up to 3h during the daytime and up to 8h overnight.
Patients with BE often require multiple extensive surgical procedures to achieve
continence. The challenge with fully understanding the data about this clinical outcome lies in the variation in the denition of continence (i.e., duration of dry interval, voiding via urethra, or does it also include patients on CIC who have an
acceptable dry interval?) and the duration of the study period [30]. Unarguably, the
most important aspect of continence is the patient’s satisfaction with their continence, and its impact on their QoL is the most important metric.
Up to 70% of patients with BE have been shown to require either bladder augmentation or urinary diversion [48]. The ability to void spontaneously via the urethra has only been reported in 14–25% of adults with BE and a continent
reconstruction, with the remainder of patients having to rely on catheterization to
empty their bladder [4, 8, 31]. Continence status has been shown to be comparable
in adults with BE [12].
It is also important to note that urinary continence is not a static outcome and is
dynamically inuenced by age, body habitus, and general health of the individual.
Short-term continence has rates of success as high as 80–90%, but as the patients
age and are followed beyond childhood, the long-term continence rates decrease
signicantly. The ongoing anatomical and physiological changes associated with
aging have been shown to impact the achievement of dry intervals in patients with
BE.In the children, there does appear to be a positive impact, with patients who
have been followed into their early adolescence demonstrating bladder growth and
urinary storage function that permits dry intervals. Woodhouse etal. have demonstrated the opposite inuence of aging beyond childhood into adulthood; in their
series, they demonstrated that of the 23% of their pediatric patients who were voiding normally, only 5% of them continued to be able to do so beyond adolescence [51].
Patient-reported outcomes have shown that only 40% of adults with BE have
sustained perineal dryness [51]. There was no difference between continent and
5 Surgical Considerations: Indications and Timing for Surgery (Dening Outcomes…
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incontinent adults with regard to social or sexual parameters, stone formation, incidence of UTIs, or kidney injury [12].
Modications to existing surgical techniques, a better understanding of bladder
cycling during childhood after repair of BE, and improved understanding of pelvic
oor dysfunction in this patient cohort may positively impact continence rates in the
future. There are already patients beneting from early referral for pelvic oor
physiotherapy/urotherapy. Up to 37% of study patients have been reported to
achieve urinary continence, and 61% show improvement of incontinence after completion of pelvic oor rehabilitation programs [50].
Preservation ofKidney Function andPrevention ofUTIs
Unlike patients with cloacal exstrophy, where congenital renal anomalies are common, most children with BE are born with two healthy kidneys. Given the abnormal
intramural ureteral anatomy, there is a high incidence of vesicoureteral reux
(VUR). Patients who are continent tend to have clinically signicant VUR, with a
higher incidence of pyelonephritis and kidney scarring noted in this cohort [7].
There is no direct impact of the timing of surgery on the child’s kidney health;
rather, this is a function of the health of the lower urinary tract that has been shown
to be improved in series of children who have undergone elective/delayed repair of
their BE.
Ben-Chaim etal. reported that up to 50% of their adult cohort of patients with
BE had experienced pyelonephritis and 18% had been diagnosed with epididymitis
[5]. This is similar to the data presented by de Jesus etal., which was a questionnaire-based study of 50 adults with BE.Recurrent UTIs were reported by 64% of
their patients, and 40% of them developed kidney scars and progressed to chronic
kidney disease [12]. Joshi etal. in a more contemporary series with 72 patients with
a median followup of 4years after repair of BE have demonstrated a 5% incidence
of CKD stage 2 or higher based on eGFR and a 30.4% incidence of kidney scarring
by DMSA.There was a higher incidence of CKD in those patients who had undergone a reoperative repair of BE [24]. Roth etal. have recently published on a series
of 197 patients with BE that underwent primary bladder repair, and they reported a
1.5% incidence of end-stage kidney disease (ESKD), compared to a rate of 0.003%
in the general population at comparable ages. In their cohort, there was a 2% incidence of CKD 3 or higher in the pediatric age group, and this increased to 8% in the
adult patients [44].
In adult women with BE who were able to achieve pregnancy, none of them had
any deterioration of the kidney function as a result of the pregnancy [26].
In summary, once the bladder has been closed in patients with BE, there is an
ongoing risk to the upper tracts irrespective of the nature or timing of the repair that
these patients have undergone. Anecdotal observations have suggested that those
children who have undergone elective/delayed repair with CPRE have better kidney
health outcomes, as they have usually undergone ureteral reimplantations at the
initial repair.
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It is recommended that kidney function and upper tract monitoring be performed
at regular intervals for all patients who have undergone repair of BE; furthermore,
since some of the impact of CKD may not be manifest until they are adults, a proper
transition of their care to adult providers is mandatory for their safety.
Conclusions
The management of BE continues to evolve as we gain better understanding of the
impact of the nature of the repair and timing of the repair. Historical teaching in the
management of BE has favored the early/neonatal repair of BE; however, more
contemporary management is increasingly trending toward the elective/delayed
repair of BE.The use of elective/delayed repair is associated with a higher incidence of osteotomies and blood transfusions. The majority of complications associated with the elective/delayed closure are of low Clavien-Dindo grade. Families
should be counseled about the differences between early/neonatal versus elective/
delayed repairs and that there is an increased possibility of minor, conservatively
managed complications and the likelihood of a blood transfusion with osteotomy
[37]. Given the dynamic impact of aging on clinical outcomes, such as continence,
sexual function, fertility, and mental wellness, it is imperative that all patients with
BE should be appropriately transitioned as adults to specialists with expertise in
managing these conditions. This will ensure not only their safety but also permit
ongoing monitoring of their clinical outcomes. Future studies that include qualityof-life metrics and patient-reported outcomes are needed to investigate the longterm complications, rate of kidney injury, continence, and sexual outcomes for
patients who have undergone elective/delayed repair of BE.
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